Following the success of our previous Tweens and Teens Weekend in 2017, we recently held another weekend, this time in Wellington. Our weekend programme was full of activities which included lots of sight-seeing around our capital city and we were…

MAY 2019 - The case series data from 3 children trialling pitolisant has been published. It was noted that the treatment was well tolerated and in addition to the previously reported positive effects on cognition (mental clarity and processing speed), pitolisant…

There is evidence that for people with PWS it is beneficial to continue treatment with growth hormone therapy even after they have reached their final height. To learn more about growth hormone treatment for teens and adults with PWS, visit our GH…

NOV 2018 - In this study, Drs. Rice, Einfeld and Woodcock aimed to develop a comprehensive understanding of temper outbursts in PWS. A survey was developed from interviews conducted with individuals with PWS and their caregivers. The survey was completed by…

JUNE 2018 - Results of the phase 2 carbetocin trial (oxytocin-like nasal spray) have been published and phase 3 is expected to begin later this year. Carbetocin is similar to oxytocin, but specifically targets only the oxytocin receptor which may…

Thank you to all the families and carers who joined us at YMCA Camp Adair, Hunua, Auckland. We think it was our biggest camp yet with 93 people booked to attend on the Saturday! It was lovely to catch up…

Have your say.... The Minister of Education has announced a three-year review of the public education system. Plans include a review of NCEA, a review of Tomorrow’s Schools, developing a future-focused Education Workforce Strategy, a continuous focus on raising achievement…

May is international PWS Awareness Month. Each year we focus on spreading awareness during May with the belief that awareness leads to increased understanding and acceptance. There are lots of ways you can spread awareness - you may want to…

Disclaimer: This website is intended to provide information only and is not intended to replace professional medical advice, diagnosis or treatment. Always consult qualified healthcare providers with any questions regarding a medical condition. Do not delay seeking medical advice with any concerns.